Alpha Stories

Published on Thursday, February 4, 2016

Bodybuilder fights Alpha-1 breathing problems with exercise

Bodybuilder fights Alpha-1 breathing problems with exercise

Nobody has to tell Bob Thornsberry the importance of exercise. He first began lifting weights regularly when he was a fullback on the high school football team in Memphis, Michigan.

Bob Thornsberry

“When I got into the Air Force shortly after high school in 1969, I got back into weightlifting right after basic training,” says Thornsberry, now 65, of Land O’ Lakes, Florida. “Later, I went to a fitness center. I didn’t know I was in really good shape, it was just something I did all the time, weightlifting, playing basketball. One day a friend of mine and I were standing with our shirts off talking to the gym owner. Two guys came in and said they wanted to join.”

The owner asked the two men what they wanted out of the fitness center.

“One of them said, ‘We want to look like these two guys,’ pointing to my friend and me.”

That’s when it sank in: Thornsberry was in great physical condition.

“So I just I kept on lifting weights and keeping in shape. To make sure you’re physically fit for the military, once a year the Air Force made you run a mile and a half, and you had 16 minutes to make it. Which is really simple, it was always easy for me. But when I got over to Rhein-Main Air Force Base in Germany, after 14 years in the military, I was having trouble with it. I made it in like 15 minutes, 5 seconds. I thought it was just a bad day. But the next year, I made it in 18.”

Facing a discharge from the Air Force for lack of physical fitness, Thornsberry argued his case. He pointed out that he’d always kept himself in top physical condition. If necessary, he intended to use his skills as a paralegal, which had been his job all during his military career, to fight the Air Force legally.

“So they sent me to Landstuhl (the huge military medical center in Germany). The doctor there said, ‘I don’t understand this, but I just got some literature about this thing called Alpha-1 and I’m going to test you for it.’”

A month later, Thornsberry was called back to Landstuhl. The doctor said, “Sgt. Thornsberry, I’m not sure what to tell you, but you do have Alpha-1 and you’re going to have to get your affairs in order. You need to get out of the service and start living your life the way you want to live it.”

It was an unforgettable shock. “Here I am, I’m really buffed out, I have 18-inch arms, a 52-inch chest, and big legs, and he’s saying I have to get my affairs in order.”

But he wasn’t prepared to follow doctor’s orders. He thought he might be able to use his paralegal research skills to research Alpha-1.

“Over in Germany, we had just one English TV channel; the rest were all German. My wife Cindy and I would tape TV at night when all the good shows were on and we’d watch it the next morning. About three days after I got back from Landstuhl, we had our evening shows taped and we were watching them next morning, and we saw Ron Crystal (Ronald Crystal, MD), this physician in Bethesda, Maryland, and he was saying on television, ‘We have this protocol for a disorder called Alpha-1 Antitrypsin Deficiency…’”

“I said, ‘Alpha-1?’ and Cindy said “Alpha-1!’”

So now the Thornsberrys knew there was a doctor who was studying a possible therapy for Alpha-1. But he was in Maryland and they were in Germany.

Thornsberry got Crystal’s secretary on the phone, and told her that he’d just been diagnosed with Alpha-1 and wanted to be in Crystal’s Alpha-1 study. He suggested she write to the doctor in charge of the military hospital where he’d been diagnosed, to see if he could get a transfer to be in the study in Bethesda.

About three weeks later, he got a call from the chief of the hospital, an Air Force general, and he asked Thornsberry what he wanted to do about the disorder. “I said I’d like to be in this Bethesda study.”

The general spoke to Thornberry’s commanding officer, requesting he be flown by medevac to Andrews Air Force Base (now Joint Base Andrews), about an hour’s drive from Bethesda, to be tested to see if he would a viable candidate for the protocol. Thornsberry’s commander sent him to Andrews AFB. He got his first workup for the Alpha-1 augmentation therapy study and went back to Germany.

After another three weeks, he got a call from Crystal’s secretary. “Dr. Crystal says you’ll be perfect for the study,” she said. He laughs about it now. “They took pictures of me. I was a body builder. The only thing wrong with me was that I couldn’t breathe.”

Crystal’s secretary wrote to Thornsberry’s base commander in Germany, and the base commander reassigned him to Andrews.

“So I worked for Air Force headquarters in Washington, DC, and began the infusion therapy protocol,” Thornsberry says. “To get there in time for the study, I had to leave Cindy, with two young boys, to handle all the moving herself.”

(Their two boys, Chris and Curtis, are healthy adults now, with no breathing difficulties.)

 Thornsberry was in a monthly infusion study (250 mg per infusion). As a safety precaution, the shortest infusion time at the beginning was 12 hours, followed by 12 hours of observation.

“I spent a year and maybe four months in the study, and had 12 bronchoscopes. Then the FDA approved the drug (in December, 1987) and I started receiving my infusions at the base, provided by the Air Force.”

Thornsberry  began working out at the Andrews gym and became friends with some men who were involved with body building contests. “They kept persuading me to compete and they talked me into it,” he says. He had to eat with great care because body builders must have extremely low body fat to show off maximum muscle definition. He also had to work out for three hours, twice a day.

“There were 30 people in the competition, and I finished fourth, the first time I ever did one. I was nervous, and I was kind of stumbling when I was out there, because I’d never done that before, but apparently I looked pretty good because I got number four in the competition. I was really happy about that. But I never did it again. It was starting to make me sick, eating less and less to lose weight and working out so hard. After my second workout every day, I had no energy at all.”

At that time, he had trouble even talking to people about his breathing problems. “People wouldn’t believe me, I looked so healthy. I was ashamed of it in a way. But if I met people with breathing problems, I was an advocate, I would tell them, ‘You need to get checked for this. Please.’”

Thornsberry retired from the Air Force in 1991 and moved his family to Florida.  He started a job with the post-traumatic stress program at the Veterans Administration hospital in Tampa, FL. He had a heart attack in 1996 and went through a bypass operation. After the operation, his breathing got worse and he was retired from the VA on medical disability and placed on oxygen full-time, making his breathing problems obvious.

Thornsberry stayed on augmentation therapy for 24 years, from beginning the study in 1986 till 2010, when he had a lung transplant at Tampa General Hospital.

Unfortunately, the transplant surgeon nicked his phrenic nerve, which is essential to functioning of the diaphragm, on the side of the transplanted lung: his diaphragm wasn’t working on that side – and neither was his new lung. Thornsberry went into the operating room using 4 liters of oxygen at rest, and came out having to use 14 liters. He had to stay in the hospital for about three months, doing exercises and therapy to get his diaphragm and new lung working well. On discharge from the hospital he was very weak and needed home therapy for an additional three months to teach him how to use his muscles again. 

At 5-10, his weight went from 220 pounds down to 190 pounds. But he worked hard on aerobic exercises and gradually improved his breathing, doing better and better on pulmonary function tests. Eventually he turned to rebuilding muscles that had gotten “flabby,” he says. He started with rubber bands, then built a gym in his garage, and he’s been lifting weights for about 10 months. He’s now at 210 pounds, and he had to buy some new clothes: his waist size went from 42 down to 36.

Recently he visited with his sister, who hadn’t seen him in several months. She was surprised at his appearance. “You’re looking good,” she said. “You lost weight, you’re getting your muscles back.”

After a lot of years of struggle, Thornsberry says, “I’m beginning to feel good about myself again.”

Also on our website: Alphas need fitness program to improve breathing, says fitness trainer dealing with her own breathing challenges